Information and My Experience with Isotretinoin/Accutane

Although this blog is devoted to my inane ramblings, I want to use this space as a forum to tell you about something serious. This post will be devoted to the drug isotretinoin, a.k.a Accutane, specifically explaining my experience with the treatment and offering words of caution.

Isotretinoin is a drug which is prescribed (primarily) by dermatologists, in order to treat a particular form of severe acne, called cystic nodular acne.  CNA is disfiguring, and both physically and emotionally painful to endure. My experience was that even thick makeup wouldn't disguise the large purple spots all over my face, and would usually result in more creeping up.

I had acne since puberty, like many people, but it only developed into CNA when I turned 19 years old. As a teenager I was treated for my acne with some fairly common drugs, such as retin-A, antibiotics and salicylic acid, all of which were effective for the type of acne I had at the time. Once I developed CNA, those treatments had no effect whatsoever, which is why I decided to visit a dermatologist and figure out what was going on.

My dermatologist told me about CNA, and said that unfortunately, there is only one known effective treatment for this skin condition—isotretinoin. The treatment typically lasts for 6 months, and involves taking the medication on schedule three times a day. She cautioned me that this is an extremely dangerous medication, and that at the time (2010), activists were lobbying to have the drug removed from the market completely due to a high number of fatalities and extremely abnormal side effects. She told me that the drug is considered to be at least as dangerous as chemotherapy.

She asked about my personal and family history of asthma, liver disease, diabetes, heart disease, osteoperosis, food allergies, mental problems, and anorexia. I won't detail all of my family/personal history, but I will say that there are basically two reasons why this history is important.

1) During the course of treatment, isotretinoin is known to temporarily raise cholesterol levels to a level that is high, sometimes dangerously so.

2) Isotretinoin may cause serious mental health problems, including depression, psychosis, and suicide.

Not playing around, both are highly dangerous and common side effects of the treatment, particularly if you have any personal history whatsoever of #2. According to this review published in 2005,

Between 1982 and 2000 the FDA has received reports of 394 cases of depression, and 37 suicides occurring in patients exposed to isotretinoin.^7,20 It is the fifth most common drug reported to the US Adverse Event Reporting System (AERS) in association with depression, and the tenth most common (and the only non-psychotropic drug) in suicide reports.⁷ In Canada...²¹ — 56 events between 1983 and 2003.²² Forty-two psychiatric reactions were reported to the British Medicines Control Agency between 1982 and 1998,²³ including a small number of suicides.²⁴ In Australia from 1995 to 1998 the Adverse Drug Reactions Advisory Committee received 12 reports of depression in patients taking isotretinoin.²⁵ Two cases were described as severe, in four there were psychotic features, in three there was suicidal ideation and there were three suicide attempts (with one completed suicide).

The review states that, at the time, there was "no clear proof of an association," but I still think that these figures are worth noting for anyone with a history of mental health problems who is considering taking this drug.

I do have a long history of depression, and a history of suicidal ideation, but I told my dermatologist that this was not a huge concern for me, because I could recognize the warning signs and would get help if necessary. If I could go back, I would have set up regular sessions with a counselor immediately after being prescribed this drug, but I was foolish and prone to making dangerous decisions at the time. I eventually developed symptoms of psychotic suicidal depression ( yes, not one, but all three problems you're warned about combined!) , but I never did seek out help for my problems because I didn't see that I was experiencing anything abnormal, and my relationships and overall health suffered severely as a result. I feel fortunate to have survived.

You're not going to like hearing this, but I would have done it again, even knowing what I do now. By the time I went to the dermatologist for CNA, my self-esteem was such a complete wreck that I'm sure I would have dunked my face in a tub of sulfuric acid if she'd told me it would get rid of my acne and make my skin look normal. What I would have done differently, like I said, was seek counseling before starting the drug, so that someone would be able to recognize the signs and help me when my mental health got completely out of control.

Another extremely important thing to know about isotretinoin is that if you are a person who is capable of becoming pregnant, you must go through a program called "iPLEDGE" in order to receive medication. You will be given a booklet, which I believe is about 50 pages long, and will have to study it and take a blood test, pregnancy test, and an exam about birth control methods every month before your prescription will be released to you.  By the way, those who cannot become pregnant will have to take a blood test every month anyway, to check cholesterol levels. So if you can't handle needles, this treatment is not for you.


I kept the booklet to show to friends and explain what I went through, so here's a photo of the cover.

I had conflicted feelings about the birth control tests. After reading the book, I totally understand and agree that using two methods of birth control consistently while on this drug is necessary for people who engage intercourse which could result in pregnancy. Here is a photo from inside the booklet which demonstrates what is likely to happen to a fetus which is exposed to isotretinoin.

My issue was that, as I explained to my dermatologist, I was not having sexual intercourse with men, and I had no intention of doing so. I was only dating women at the time, and had zero interest in men sexually. My dermatologist did not seem moved to sympathy in the slightest, and simply told me that on the test I would mark that my birth control choice was "abstinence." Every month, in addition to the government required test, she would ask me to verbally confirm that I was continuing to use my choice of "abstinence," and look at me in a way that I interpreted as skeptical. This experience was incredibly degrading and humiliating for me, especially because I had to go through this for a total of 8 months (one pregnancy-free month had to be achieved before being prescribed, and one follow up visit after the 6 month of treatment), and because of my fragile mental health state. I felt that my orientation was disrespected and I felt slut shamed. But I endured, because I desperately wanted clear skin.

Other than all of those possibly fatal side effects, you will very likely experience some uncomfortable side effects in the course of treatment. Basically, your skin is going to be constantly peeling off in sheets, which isn't that uncomfortable physically, but it might make you self-conscious. Your lips will also crack and peel constantly, so you will use tubs of lip balm, and it might be a little bit painful at times. Your vision at night will totally suck, dudes. Avoid being outside when the sun goes down unless you have someone to drive you or even walk around with you, because you might trip and fall on your face. Bring a flashlight with you.

I'm not going to show you before and after photos. This is because I don't want someone who is on the fence about this treatment, because they believe they might experience severe side effects, to see my photos and decide to go through with the treatment regardless of the harm. I think anyone with CNA should spend some time seriously considering if this is worth it for themselves, and take actions to be responsible with their overall health if going through with it. Please be sure that you have a support network of family, friends, counselors, etc in place and do lots of self-care.

So that is basically what I have to tell you. I could tell you some horror stories I'd read about on acne forums, but I don't want to scare you with things that I don't have any personal experience or proof of. In any case, I hope that this post will reach people thinking about using this treatment. Thanks for reading.